Afiq pucat (17/12/11)

Assalamualaikum,

2,3 hari ni Afiq nampak stabil. Afiq sangat aktif sehinggakan tercabut wayar oxygen.

So, kelmarin, try off oxygen 24 hours.

Tapi petang, Afiq nampak pucat. Selepas cepat-cpat sambung balik oxygen, dalam 10 minit, OK balik.

Nampaknya tokleh betul-betul off oxygen lagi.

Hari rabu ni, ada appointment dengan pakar bedah, so mungkin boleh tanya 2nd opinion.

Secara logiknya, macam cleft specialist royak pada 5/12/11 baru ni, kalau oxygen level hanya 0.5liter, tak ada significant change daripada ambient oxygen level (oxygen dalam bilik).

 

Naim

Update temujanji di klinik dental, jabatan bedah mulut (12/12/11)

Assalamualaikum,

Hasil daripada temujanji di klinik dental, jabatan bedah mulut, pada 12/12/11, ada 2 output/maklumat penting.

1) Klinik dental akan terus monitor perkembangan pertumbuhan gigi Afiq. Memandangkan specialist cleft hanya akan tengok Afiq pada June 2012, makes no sense untuk klinik dental terus jumpa Afiq pada setiap bulan. Oleh itu, next appointment dengan dental adalah bulan June jugak.

2) Doktor bertugas ada sebut pasal ada kes-kes baby Pierre Robin yang tidak tumbuh gigi atau lambat tumbuh gigi. Perkara ni sedikit merungsingkan. Doktor pun tidak bertahu apa tindakan seterusnya. Aku pun tak tanya.

 

Takper. Nanti boleh call klinik dental untuk dapatkan confirmation.

 

Wassalam.

 

Update result appointment di HKB 05/12/11

Assalamualaikum,

Minggu lepas (05/12/11), Afiq ada 2 appointment di HKB

1) Klinik Pakar Kanak-Kanak

2) Klinik Gigi (Cleft Specialist)

 

Hasil daripada appointment di Klinik Pakar Kanak-Kanak:

1) Masalah jantung - berdasarkan scan (echo), masalah jantung Afiq semakin berkurangan. Doktor sudah downgrade daripada moderate PDA ke small PDA

2) Kebergantungan kepada oxygen - berdasarkan keadaan semasa, doktor sudah recommend oxygen level diturunkan daripada 1 liter kepada 0.5 liter

3) Masalah jeluok - doktor recommend tukar susu daripada Novolac AR kepada Dumex sebab Novolac AR tidak effective

4) Masalah jeluok - Afiq dah didiagnose ada penyakit GERD. So, kena maintain makan ubat anti reflux sehingga diberitahu

5) Masalah tangan dan kaki - doktor beri surat rujukan ke pakar fisioterapi

6) Masalah lelangit berlubang - kena jumpa pakar dental di jabatan pakar bedah mulut, esok 12/12/11

7) Masalah lain - dah dapat surat rujukan ke Pakar Bedah (Surgical Outpatient Department), 21/12/11

Kena pergi balik ke Klinik Pakar Kanak-Kanak pada 02/01/2012

 

Hasil daripada appointment di Cleft Specialist - > 10 specialists dok keliling Afiq.

1) Kena cari puting warna kuning sebab lebih lembut. "Fatwa" daripada doktor ni diragui sebab bila aku gasak sikit, material apa puting warna kuning tu, dia tokleh jawab. Sorang jawab latex, sorang jawab silicone. Conclusion: fatwa ikut sedap. tapi takper, kita akan try jugak suggestion doktor

2) Kena biasakan Afiq duduk meniarap

3) Operate Afiq boleh dibuat bila Afiq umur setahun

4) Sebelum operate, kena ada pre-assessment

5) Doktor tak suka cara orang putih buat dalam facebook - massage dagu. Kenapa? Tak suka lah !. Hahahahahaha. And you call yourself a specialist, doctor? Mesti ada valid medical opinion la doktor.

Next appointment: June 2012

 

Wassalam.

Kimi demam

Assalamualaikum,

Nak update sikit jer.

Kimi masih lagi demam, dah 2,3 hari demam. Masa bekwoh Hafizah hari tu, dia toksey makan langsung. Bila balik kemumin, dia royak sakit gigi. Sebelum tidurkan Kimi, terpaksa bawa dia naik kereta jalan-jalan sekitar kemumin untuk hiburkan dia.

Lo ni pun, dia masih takdok selera makan. Untuk pastikan dia sentiasa ada protein intake, sentiasa ada kacang dan cheese di rumah. Kalu dia tak makan nasik pun, dia boleh makan cheese dan kacang. Lauk ayam pun dia tak berapa berehi lo ni.

2,3 hari ni, dok wi makan ubat hok beli di farmasi tapi demam tak kebah jugak. So, semalam, wak gi ke Klinik Keluarga. Suhu Kimi 38.1 celcius. Habis RM40 untuk 4 jenis ubat. Hopefully hari ni demamnya recover lah.

Tapi Kimi ni, walaupun demam pun, dia tak berhenti bergerak. Kalu org lain, demam tu, tidur lah. Kimi, demam pun, aktif. Cuma tak makan. 2,3 hari tak selera makan ni, dah nampak perbezaan pada tubuh kimi. Nampak tubuh kurus sikit.

Esok ni, plan nak bawa Kimi dan sepupunya Muzam (anak arwah Abe Li) ke Taman Tengku Anis untuk happy-happy sikit. Kena hiburkan sikit Muzam ni sebab dia ni anak yatim.

 

Wassalam.

Afiq status update

Assalamualaikum,

Dah 2,3 hari tak sempat nak update blog. Tak banyak nak update hari ini, cuma Afiq dah umur 4 bulan 1 Muharram baru ni. Afiq pun semakin berat. Kalu riba setengah jam, sero lenguh doh. Kali terakhir  timbang di Klinik Kesihatan 2 minggu lepas, ~ 3.7kg (umur 3.5 bulan). Minggu depan akan ke HKB untuk appointment, so mungkin boleh tahu berapa berat Afiq nanti.

So far, dah kurang occurence 'jeluok' tu. Kalu dulu, setiap kali beri susu, boleh kata 50 - 100% susu akan keluar balik (muntah/jeluok). Sekarang ni, boleh kata 0 - 25% susu akan keluar balik. Much improvement.

Pah tu, Afiq tiap hari nk meniarap, cuma dia tak reti nak pelepas tangan. Kalu kimi dulu, 8 bulan baru boleh bbalik.

 

OK, gambar terbaru Afiq tak ambil lagi. Rambut dah pendek sikit. Nanti weekend ni update lagi.

 

Wassalam.

Oxygen tank capacity (2)

Assalamualaikum,
Just to update on trial run on oxygen tank #2.
Capacity trial run conducted - result is similar. about 11 hours of usage with minimum travelling (minimum time spent on the road).
So, no more worry.

Naim

Oxygen tank capacity

Assalamualaikum,

Today;s posting is in English.

As preparation for Hafizah's wedding, I have done 2 things to enable me & family to attend this wedding, and after that, back-to-back appointments at different sections at HKB that occupy the whole day on 5th December.

Actions taken are:

1) Buy another tank (back-up tank)

2) Conduct trial run for tank capacity

Why all this? Well, all these are needed since HKB has directly told me that the oxygen concentrator machine is not designed for travelling. So, no more bringing back oxygen concentrator for weekend balik kampung trips.

Last weekend, in addition to purchasing back-up oxygen tank (RM300 in deposit, fully refundable once the tank is returned back to Gas Pantai Timur), I've done tank capacity trial to simulate the 2 events stated at start of this blog posting.

Why the trial? Contradictions in statement between oxygen provider (Gas Pantai Timur) and HKB. Gas Pantai Timur says a 5-liter tank can last for 8 hours while HKB says it is longer thank that (but HKB dont know how long. They never keep track but they feel that the figure is not right).

All this while, a full tank can last for 3 visits to HKB (weekly appointments), or about 6 hours. Last week was my thrid re-fill at Gas Pantai Timur.

So, to satisfy my curiosity, last Saturday, after refilling the tank, I went back to Tiong (together with Ain, Afiq and Kimi lah). We depart from Kemumin at 9.30 and arrive at Tiong at 10.00am (no traffic that day, usually close to 1 hour because I drive slowly, below 60kph). After 'parking' Afiq at Tiong, I went about my business, going to HKB to get medical supplies, went to Salor to see Ma, etc.

Normally, 6 hours of usage will see the indicator at "Refill". But on this occasion, at 4.30pm, when we are packing things into car to go home, the indicator is still at half full. So, after we got back to Kemumin, I decided to continue using oxygen from tank instead of oxygen concentrator machine to see how much longer it can last.

The result: nearly 11 hours of usage.

Anyway, I noticed 2 things different for this tank compared to other tanks used previously.

a) This tank was not filled in a hurry. I gave the company 3 days to fill it, compared to 30 mins for other tanks

b) Minimum travelling during use of this tank (about 1 hour of travelling), compared to almost all time for travelling (~ 6 hours) for other tanks.

That's the parameter we are going to use during the wedding. As for the back-up tank, we are going to test it too soon.

 

Wassalam.